JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 10, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0566
Personal Reflection
‘‘Hospice Killed My Grandmother!’’ Cynthia Drenovsky, PhD
T
he phlebotomist said it to me as she poised the needle a millimeter above my vein. It was just a routine blood draw for my yearly physical and we were pleasantly chatting about our jobs and families. I told her that I was a hospice volunteer in a local nursing home and she said that she often subcontracted there. ‘‘Oh yes, I know about hospice.’’ She clenched her jaw slightly and hissed through her teeth, ‘‘Hospice killed my grandmother!’’ ‘‘Well, um, that’s not really how hospice works,’’ I stammered. I held my breath until the draw was over and she safely removed the needle. As she applied the tiny bandage to the puncture site, I explained to her that hospice is specifically for people who are deemed terminal by their physicians. And then I said what hospice volunteers are not supposed to say, ‘‘Your grandmother’s doctor knew she was going to die. Hospice is for dying people.’’ Well-trained hospice volunteers know this is not true. Hospice is for living, not dying. Hospice is for people who want to embrace life and face death. But here I was with a health care professional who did not know this basic fact about hospice care. I was so shocked at her ignorance that I panicked and blurted out that statement because I assumed most Americans, and especially a health care professional, should at the very least, know this about hospice: The patients are dying. The patients die. That is what makes it hospice. Because hospice care has grown significantly in the past 20 years, I believe we are becoming increasingly complacent about educating our communities on the basics of hospice. According to the National Hospice and Palliative Care Organization (NHPCO), an estimated 1.65 million patients received services from hospice in 2011.1 Of all of the deaths in the United States, 44.6% were deaths that occurred in a hospice program.1 That is a lot of hospice deaths. So many that it seems like everyone should be well informed about the purpose and goals of hospice. However, I continue to find that people are misinformed about hospice care. We know that hospice does not exist to frighten people, but it does. By way of illustration, let me reveal that I often feel like my hospice identification badge is construed as a type of Grim Reaper costume. When I walk into the day room of the nursing home, visiting family members will glance at my badge and gasp in terror. Sometimes they stand up, paralyzed by fear as their chairs topple over behind them. The looks on their faces say, ‘‘Please, Hospice Lady, not me. This cannot
be my time. I’m not ready!’’ I feel the need to reassure them, ‘‘That’s not really how hospice works. Hospice doesn’t choose you. You choose hospice.’’ Why don’t they know this? The answer is that many don’t know this until they are in the position to use the services of a hospice organization. Much like cancer or any other peril that life brings, people do not become educated about hospice until they need to become educated. One time I participated in the early stages of a death vigil in a nursing home with a family whose mother was actively dying. Even though the hospice nurse had said she thought the mother would die within the next 24 hours, two of the relatives kept saying they didn’t think their mother was really dying. Their mother died in the night with no one at her side because her children went home after they convinced the latenight hospice volunteer to go home. Why didn’t this family believe the hospice nurse that their mother was in her final hours of life? Should I have seen this as a teachable moment during the early stages of the vigil and been more forceful in pointing out the color of their mother’s legs and feet, the coldness of her hands, her breathing? And didn’t they get all of this information in a pamphlet when their mother was admitted to hospice? Of course they did. Just because hospice care is more common today than ever, we cannot assume that everyone completely understands hospice care—even among health care professionals. We need to present realities and dispel the myths about hospice among our neighbors, co-workers, and friends. Here are some of the facts about hospice that I frequently need to explain to people:
Hospice is care for the terminally ill. It seems like everyone American should know this, but they do not. I have also found that there are people who think that terminally ill means ‘‘really sick.’’ We must make sure that people understand that terminal means this person will die from whatever disease he or she has. Palliative care is essential to hospice care. Many Americans do not know what palliative means, so it is a good idea to define it for them. It is also important to tell people that palliative care includes more than pain medication; however, pain medication is fundamental to the quality of life for hospice patients. It is not the goal of hospice to kill people. Even when we see the statistics that 35.7% of hospice patients die
Department of Sociology and Anthropology, Shippensburg University, Shippensburg, Pennsylvania.
1181
1182
or are discharged within seven days of admission,1 this does not suggest that hospice causes their death. Patients die very soon after admission because they were indeed, terminal. No one should die alone. There are several profound reasons for being present at the time of death. Sociologically speaking, we often cite that rituals commemorating deaths or celebrating the lives of the deceased are cultural universals. In other words, death rituals exist in every culture around the world. All societies, regardless of religiosity, have come to see the significance of acknowledging the deaths of their members, because ignoring deaths would mean ignoring lives. Of course, there are countless additional facts and myths about hospice that we address regularly as we go about our work. Death continues to be a frightening taboo topic for
PERSONAL REFLECTION
many people and our ability to communicate accurate information when it is needed will help ease the fear. References
1. National Hospice and Palliative Care Organization: Facts and Figures: Hospice Care in America 2011. Alexandria, VA: NHPCO, 2012.
Address correspondence to: Cynthia Drenovsky, PhD Department of Sociology and Anthropology Shippensburg University 1471 Old Main Drive Shippensburg, PA 17257 E-mail: [email protected]
Personal Reflection
‘‘Hospice Killed My Grandmother!’’ Cynthia Drenovsky, PhD
T
he phlebotomist said it to me as she poised the needle a millimeter above my vein. It was just a routine blood draw for my yearly physical and we were pleasantly chatting about our jobs and families. I told her that I was a hospice volunteer in a local nursing home and she said that she often subcontracted there. ‘‘Oh yes, I know about hospice.’’ She clenched her jaw slightly and hissed through her teeth, ‘‘Hospice killed my grandmother!’’ ‘‘Well, um, that’s not really how hospice works,’’ I stammered. I held my breath until the draw was over and she safely removed the needle. As she applied the tiny bandage to the puncture site, I explained to her that hospice is specifically for people who are deemed terminal by their physicians. And then I said what hospice volunteers are not supposed to say, ‘‘Your grandmother’s doctor knew she was going to die. Hospice is for dying people.’’ Well-trained hospice volunteers know this is not true. Hospice is for living, not dying. Hospice is for people who want to embrace life and face death. But here I was with a health care professional who did not know this basic fact about hospice care. I was so shocked at her ignorance that I panicked and blurted out that statement because I assumed most Americans, and especially a health care professional, should at the very least, know this about hospice: The patients are dying. The patients die. That is what makes it hospice. Because hospice care has grown significantly in the past 20 years, I believe we are becoming increasingly complacent about educating our communities on the basics of hospice. According to the National Hospice and Palliative Care Organization (NHPCO), an estimated 1.65 million patients received services from hospice in 2011.1 Of all of the deaths in the United States, 44.6% were deaths that occurred in a hospice program.1 That is a lot of hospice deaths. So many that it seems like everyone should be well informed about the purpose and goals of hospice. However, I continue to find that people are misinformed about hospice care. We know that hospice does not exist to frighten people, but it does. By way of illustration, let me reveal that I often feel like my hospice identification badge is construed as a type of Grim Reaper costume. When I walk into the day room of the nursing home, visiting family members will glance at my badge and gasp in terror. Sometimes they stand up, paralyzed by fear as their chairs topple over behind them. The looks on their faces say, ‘‘Please, Hospice Lady, not me. This cannot
be my time. I’m not ready!’’ I feel the need to reassure them, ‘‘That’s not really how hospice works. Hospice doesn’t choose you. You choose hospice.’’ Why don’t they know this? The answer is that many don’t know this until they are in the position to use the services of a hospice organization. Much like cancer or any other peril that life brings, people do not become educated about hospice until they need to become educated. One time I participated in the early stages of a death vigil in a nursing home with a family whose mother was actively dying. Even though the hospice nurse had said she thought the mother would die within the next 24 hours, two of the relatives kept saying they didn’t think their mother was really dying. Their mother died in the night with no one at her side because her children went home after they convinced the latenight hospice volunteer to go home. Why didn’t this family believe the hospice nurse that their mother was in her final hours of life? Should I have seen this as a teachable moment during the early stages of the vigil and been more forceful in pointing out the color of their mother’s legs and feet, the coldness of her hands, her breathing? And didn’t they get all of this information in a pamphlet when their mother was admitted to hospice? Of course they did. Just because hospice care is more common today than ever, we cannot assume that everyone completely understands hospice care—even among health care professionals. We need to present realities and dispel the myths about hospice among our neighbors, co-workers, and friends. Here are some of the facts about hospice that I frequently need to explain to people:
Hospice is care for the terminally ill. It seems like everyone American should know this, but they do not. I have also found that there are people who think that terminally ill means ‘‘really sick.’’ We must make sure that people understand that terminal means this person will die from whatever disease he or she has. Palliative care is essential to hospice care. Many Americans do not know what palliative means, so it is a good idea to define it for them. It is also important to tell people that palliative care includes more than pain medication; however, pain medication is fundamental to the quality of life for hospice patients. It is not the goal of hospice to kill people. Even when we see the statistics that 35.7% of hospice patients die
Department of Sociology and Anthropology, Shippensburg University, Shippensburg, Pennsylvania.
1181
1182
or are discharged within seven days of admission,1 this does not suggest that hospice causes their death. Patients die very soon after admission because they were indeed, terminal. No one should die alone. There are several profound reasons for being present at the time of death. Sociologically speaking, we often cite that rituals commemorating deaths or celebrating the lives of the deceased are cultural universals. In other words, death rituals exist in every culture around the world. All societies, regardless of religiosity, have come to see the significance of acknowledging the deaths of their members, because ignoring deaths would mean ignoring lives. Of course, there are countless additional facts and myths about hospice that we address regularly as we go about our work. Death continues to be a frightening taboo topic for
PERSONAL REFLECTION
many people and our ability to communicate accurate information when it is needed will help ease the fear. References
1. National Hospice and Palliative Care Organization: Facts and Figures: Hospice Care in America 2011. Alexandria, VA: NHPCO, 2012.
Address correspondence to: Cynthia Drenovsky, PhD Department of Sociology and Anthropology Shippensburg University 1471 Old Main Drive Shippensburg, PA 17257 E-mail: [email protected]
